Evidence map›Paper›PMID 42271551›Full record

ArticleResearch involvement and engagement2026

Reducing tokenism in patient and public involvement by integrating the Gothenburg person-centred care framework, relational bridges and impact log - a co-produced position paper.

Jana Bergholtz, Sara Wallström, Hanna Gyllensten, Emma Forsgren, Ida Björkman, Joakim Öhlén, Inger Ekman, Axel Wolf

Abstract readLetter
In one paragraph

Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Jana BergholtzCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden. jana.bergholtz@gu.se.ORCID http://orcid.org/0000-0001-6651-9110
Sara WallströmCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0001-7579-4974
Hanna GyllenstenCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0001-6890-5162
Emma ForsgrenCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0002-2402-0909
Ida BjörkmanCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0003-3171-683X
Joakim ÖhlénCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0003-2429-8705
Inger EkmanCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0002-5559-5203
Axel WolfCentre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID http://orcid.org/0000-0001-6111-8377

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatient and public involvement (PPI) is widely promoted in health research, care services and governance. It is increasingly framed as a matter of rights, dignity and accountability. Despite strong policy support, PPI remains conceptually diverse, unevenly implemented and persistently vulnerable to tokenism, with PPI contributors often reporting unclear influence and weak feedback. Recent literature has highlighted the need for stronger ethical anchoring of PPI beyond standards, frameworks and reporting requirements. MAIN ARGUMENT: This position paper explores how tokenism in PPI can be reduced by adapting established steps from the Gothenburg person-centred care (PCC) framework, grounded in Paul Ricœur's "little ethics", to involvement practices beyond the clinical encounter. We propose person-centred PPI (PC-PPI) as a practice-oriented approach comprising three core collaborative steps: (1) Initiating the partnership through shared narrative, (2) Working the partnership through explicit negotiation of decision rights, and (3) Safeguarding the partnership through documentation and follow-up, as well as three organisational readiness domains that function as ethical minimum requirements for reflective self-assessment for all involved. CONTRIBUTION: PC-PPI shifts the focus from general levels of influence to specifying and documenting meaningful decision rights for concrete activities, supported by practical tools such as a relational bridge framework and an impact log. The feedback loop supports contributor empowerment during the involvement process by making influence visible, explainable and contestable over time. Organisational readiness domains further clarify that PC-PPI cannot rely on willingness alone, but requires sustained ethical, structural and accountability support. IMPLICATIONS: By translating person-centred ethics into concrete steps and organisational practices, PC-PPI offers a pragmatic way to reduce tokenism while remaining adaptable to context, resources and ongoing learning. The approach has implications for professionals, organisations, and policymakers seeking to move from formal PPI requirements towards auditable, ethically grounded partnership practices.

Indexed as

Co-productionGothenburg frameworkPartnershipPatient involvement, Patient participation, Public involvementPerson-centered carePerson-centred careRicœurTokenism

Identifiers

PMID42271551
PMCPMC13255459

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.